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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About bigapplekathleen

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  1. frustrated with my auto immune disease...

  2. Hi everyone, Ok... I just need to vent here. Thoughts and suggestions are welcome, though, if you have had experience with the same issues! I have a history of celiac (actually, "non-celiac" gluten intolerance and severe wheat allergy), lymphocitic colitis, chronic apthuous ulcers, ever-changing thyroid numbers - on the low side, thyroid nodules, ovarian cysts, fibrocystic breast lumps, and lots of other issues. I am now dealing with extreme hyperhidrosis. I saw a dermatologist Thursday hoping for botox to stop this, but he said it's way bigger than botox and gave me Robinul until I can see an endocrinologist. It's a 2-month wait to see an endo here in my town. However, I live 45 minutes from NY City, so I will call Monday to try to get in to see someone. I have been on prednisone for 20 months for the apthuous ulcers and other auto immune symptoms. Whenever I try to taper off all the way, I get really sick below 5 mg. I made it down to 2 mg a day for a while and got really bad sores again and lots of aches and pains. I also take Entocort 6mg (for 12 months now). I use the Nuavring to control the ovarian cysts. Since dropping my prednisone dose this spring, I feel achier and achier. The mouth sores are always there (after having gone away for a while). My body isn't producing cortisol on its own. MY cortisol level is 6. It was 10 in January. The doctor said it needs to be a minimum of 18; she said at 5, I would have to be in the hospital. So, here's my frustration. Those of you that know me know that I am a professional who works at a very high level. My life is busy and I am very involved in many things. Yes, my life is busy. Yes, my life is stressful sometimes. But, I stick to a wheat-free diet, I eat mostly very healthy natural, unprocessed foods. Yet, I still feel like crap. So, do I wait 2 months to see an endocrinologist, call to see someone at a regional medical center earlier than that, go back to my naturopath, or go back to my celiac doc (one of the best)... I actually have a regular check-up appt with him in June, but don't know if I really need to see him. I just need to see someone who can fix this endocrinological stuff. I am sick of being sweaty and tired. The Robinul makes me sleepy (counteracts the steroids, i guess!) Thoughts? K
  3. I posted something on here in 2004 about my fabulous dentist in Stamford, CT who was very Celiac-aware and took really good care of me! Unfortunately, he has sold his practice and his office is a disaster now. I don't trust going there at all. So, I am trying to find a new dentist in the town where I now live. I have called 4 or 5 dental offices this morning and two basically told me they wouldn't accommodate Gluten-Free! Does anyone have any recommendations for dentists in Danbury, Brookfield, Newtown, Bethel, Ridgefield, Redding, Wilton? Thanks! K.
  4. I Need Help Please!

    I continued to have symptoms, too, despite having been gluten-free since 2003. I used the Specific Carbohydrate Diet (it was great!) and the PALEO diet (it was BETTER!). However, they finally figured out that I have Lymphocitic Colitis. Have you been biopsied for that? Apparently they have to take a minimum of 12-16 biopsies throughout the colon to catch it. Taking just few biopsies is NOT enough. There are also other things that cause continual diarrhea - things like gallbladder disease, IBS, other forms of colitis. Also, look VERy closely at your vitamin D level. If you have been sick, the optimal number is somewhere between 50-80 for Vitamin D and most of us hover around 20 or 30 or less, which isn't enough to fight disease, etc. Good luck!
  5. I just wanted to let you all know that they have FINALLY figured it out. (I posted something on another message with complete explanation if you want to look it up.) My new gastro did biopsies 3 weeks ago that showed Lymphocitic Colitis, which certainly explains A LOT. I am better already on 18 days of 9mg/dayEntocort and 6 caplets a day of Pepto Bismol (plus still on 5 mg of prednisone). Thanks for all of your support through this past year of horrible stuff ! K
  6. Scd Diet Or Paleo Diet?

    FYI - update... They just diagnosed me with Lymphocitic Colitis... which is the cause of all the previous trouble + more recent ones. (look at my other posts) K
  7. Just wondering if you are better. One thing I have learned from some other LC patients is that LC often responds to Cipro or Levaquin. (the danger of these drugs, though, is that they can cause tendons to rupture.) I ALWAYS get better on those 2 antibiotics. I have been on Entocort for 19 days now... feeling much better and symptoms are subsiding. Kat Celiac - diagnosed August 2003 Lymphocitic Colitis - diagnosed May 2009 Other issues: Epstein Barr Virus, low Vitamin D, Chronic Canker Sores, Ovarian Cyst, Fibrocystic Breast Lumps, Immune deficiency, Elevated C-reactive protein, parasites (2x), fevers, night sweats, Neck injury (whiplash 3x), Thrush/yeast infection recently, food allergies (52) and drug allergies (most).
  8. Hi there, I was just diagnosed with Lymphocitic Colitis 2 weeks ago. I have been on a strict gluten-free diet since August 2003, when I was diagnosed with Celiac. My biopsy 2 weeks ago shows no current sign of Celiac, so that at least shows I am following the diet! So how's this for a story? I have been horribly ill for the past year. It all started when I fainted on a plane in April 2008 and hit my head. I had a concussion and a fever. No one knew why I had a fever. My doc suspected Lyme Disease, but the tests were negative over and over. Another doctor finally diagnosed Epstein Barr and low vitamin D in June 2008. In September, the mouth sores started. I had HUNDREDS of them in my mouth. It was disgusting. I got to the point where I could no longer swallow and ended up in the hospital. After tests for coxsackie virus were negative, the doctors were more baffled. Everyone thought the mouth sores could just be from the EBV or Celiac, but they were clustered and came by the dozens and hundreds. They put me on high dose prednisone and the sores stopped. Every time they weaned me off the prednisone, the sores returned, so they kept using the prednisone. They switched to colchicine for a while, but it didn't work. My rheumatologist put me back on the prednisone (low dose this time) in March. Meanwhile, they ran every blood test known to man and biopsied the sores. They were just apthuous ulcer - common canker sores. Blood tests showed lowered immune function and low Vitamin D. I begged my gastro to do an endoscopy and colonoscopy, but he refused, saying I just had one 18 months ago and it was fine. (But I wasn't so sick back then). Then in February, I ate at a restaurnat and became violently ill 2 hours into my meal there. I have never been so sick at a restaurant. The diarrhea that started that night lasted for 9 weeks. It only stopped when I took levaquin for a sinus infection for 5 days. Meanwhile, small bowel series with barium showed nothing. Ultrasound showed nothing. I switched to a new gastro and he suspected auto-immune disease & thought he could find it in a biopsy, but his staff couldn't fit me into the schedule for 2 months. I got sicker and sicker. Finally, I was so sick, they fit me in on an emergency basis. I had a 100 fever when I got there, raging thrush in my mouth, and such severe D that the prep for the colonoscopy seemed dumb. After the procedure, I got worse and worse and ended up in the hospital 3 days later with severe dehydration (fever, tachycardia, blood in stool). The ER put me on Cipro, which seemed to help, and they gave me diflucan for the thrush, and ran tons more tests, including an abdominal cat scan that showed nothing. My biopsy results came back 2 days later and showed Lymphocitic Colitis. The doctor immediately started me on 9mg of Entocort Daily, Pepto Bismol 6 caplets a day, in addition to the prednisone (5mg) and allergy pills that I already take. (To top it off, I asked the current gastro why the other gastro hadn't caught this on the colonscopy 18 months ago and he said the first doc had only taken THREE biopsies. The current doc then said that 12-16 are necessary for proper diagnosis of something like this....meaning the first doc hadn't done his job. The first doc, in fact, believed there was nothing wrong with me and even doubted my Celiac diagnosis, even though I am also a patient at the Celiac Disease Center.) I cannot even begin to tell you how much better I feel on the Entocort. It took a full week for the D to stop, but now everything is back to normal. However, the gluten-free diet just isn't enough with this disease. Now I seriously have to follow a PALEO diet and also have to overcook everything - even fruits. I cannot tolerate dairy, soy, corn, and obviously, gluten. I seem ok with rice and have been eating a lot of steamed rice just to have SOMETHING to eat that will stay down! I would love to hear from any other celiacs who are also dealing with LC. It seems like such a rare disease, from what I have read, and it's impossible to even locate an in-person support group for this. I have an appt with my nutritionist in NY City in 2 weeks to make a plan, esp. since I am not really absorbing stuff properly and am very concerned about deficiencies. Also, when I got sick a year ago, I was preparing for a triathlon, so obviously those plans were put off due to the EBV, which is now gone. I feel better, esp. now that I can eat again, and hope to start training again soon, but this time it will be just for normal workouts with no race plans . I would love to hear from anyone who has advice or who has been through anything like this. Thanks so much! Kat
  9. Desperate To Sort This Out

    I agree with the previous 2 replies, and would like to add that perhaps even the paleo diet might help. Check out the book 'THE PALEO DIET" by L. Cordain. There are some great websites, too. SCD might help you heal. FYI: I was diagnosed as being wheat-intolerant by a French doctor after having repeated infections. She was right, and my celiac blood tests were positive. However, I do not carry the GENES for celiac, but have been seen by one of the top celiac docs in the world and he agrees with the diagnosis of gluten intolerance. BUt i know that I do TERRIBLY when I eat dairy or grains. Once in a while, I start to eat gluten-free baked goods, and then I usually end up getting sick (infections, etc). good luck - K
  10. Hi everyone, I noticed in a lot of posts on this thread that people are talking about SCD diet being low-carb. I guess it COULD be, depending on what you eat, but if you follow the diet suggestions in BREAKING THE VICIOUS CYCLE, the diet is actually pretty high in carbs. The book does a great job of explaining the premise behind the diet and why following it fixes a lot of intestinal issues. I have never felt better than when I have stayed on this diet, but it's hard to stay on it when everyone else around you is eating lots of other stuff... with that said, however, I have been sick enough in 2008 that I am back on the SCD. It's been a week now and I feel a lot better already. Does anyone know of a place where we can order SCD-legal breads, muffins, etc? (rather than make everything from scratch at home?) Thanks! Kat
  11. Hi everyone, After a 12-week bout with chronic aphthous ulcers (hundreds of them; I was hospitalized), a roller-coaster ride on high-dose prednisone for 11 weeks, and now dealing with daily colchicine (indefinitely) for control of the canker sores, I am back on the SCD Diet (which is very nearly PALEO, except for a some dairy on the SCD). My doctors cannot pinpoint the cause of my canker sore outbreaks (which keep coming back). I usually get canker sores when I get glutened, but have never had HUNDREDS of them. So, we are thinking that this may have been caused by a food sensitivity. The SCD diet seems like the safest choice right now as I try to get my body back to optimal health. I am wondering if anyone here is also following this diet. I am missing my gluten-free snacks SO MUCH, but my body feels so much better on SCD. If you are following SCD, what do you do when you eat out in the city? I am carrying a cooler with me everywhere with very simple food, but am sick of not being able to join my friends for dinner in a restaurant. Does anyone know of any stores that sell SCD-legal foods (such a backed goods containing nut flours)? The thought of going through the holidays eating chicken soup and broiled meat is a little disappointing. I should mention that i followed the SCD when I was at a point of terrible illness with Celiac, and it worked wonders. I also ate strict PALEO diet for more than a year after diagnosis, and it was great, too. It's hard to stick to either one, though, for an extended period of time, since no one else eats that way! Thanks! KAT gluten-free since 2003 (Diagnosed with non-celiac gluten intolerance... VERY SENSITIVE to gluten) Every possible gluten-related medical issue that you could imagine... plus recently - Vitamin D Deficiency 2008 Lowered Immunity (low IgG) 2008 and in 2003 when it was last checked Chronic Aphthous Ulcers 2008 Epstein-Barr Virus (mono reactivation) 2008
  12. I don't even have gluten foods in my house. IN fact, they have never been in my house, since I just bought it 2 years ago and it was new. I live alone. My friends don't bring gluten here. I do not eat out at all anymore. I eat no processed foods - just meat, fish and veggies (and a little fruit). That's it. My toothpaste is tom's of maine - which is gluten-free. I don't use mouthwash (too painful). I use chapstick (gluten-free). Shampoo and cosmetics are all gluten-free. All drugs have been checked for gluten. (I carry a gluten-free drug list with me, and use my iPhone to check the online list and even call the companies to check.) I use no vinegar and no grain alcohols. (not allowed to drink because of my mono.) I have no pets; I don't use anything that poses a threat, unless they have started putting gluten in the ink in the newspaper or in my printer ink. ( Like that could ever happen!) And, really, I am not ingesting that stuff. I use antibacterial hand wipes in the car but they are even gluten-free. There is NOTHING that poses a gluten threat. NOTHING. I am not having ANY stomach issues, which normally would be severe with gluten ingestion, so it doesn't seem to be a current gluten issue at all. In fact, during this crisis, I have started to eat dairy again and it hasn't even bothered my stomach. (I wasn't off of it because of allergy...just didn't like it and once in a while it upset my tummy...but not now.) The doctor refused to try the Dapsone today because of my sulfa allergy (because, ironically, my symptoms from sulfa include MOUTH SORES and rash as well as stomach issues). We just can't go there. They are suggesting Colchicine instead, but will wait til the current prednisone dose is over. The did a punch biopsy on my mouth sores today to check for more stuff. I also called the Celiac Disease Center and they are seeing me right away tomorrow and they will consult with my infectious disease doctors. Some of my blood work has come back, and is negative for everything from coxscakie to lupus and vitamin deficiencies. But, it's all not back yet, so we really don't know. I am just at a loss. In my industry, it's tough to not be able to speak properly. It even hurts to smile. And now I am completely wired again from the prednisone I started again today (for 2 more weeks). I simply cannot believe it's even related to gluten, but everything is pointing to that since it seems the most logical cause. I appreciate just being able to sound-off about this. My non-celiac friends don't get it. And when I tell people I have a canker sore outbreak, they don't really 'get' that I mean HUNDREDS. The pain is unbearable. k
  13. Ok...complete frustration here... After taking prednisone for FOUR WEEKS, the sores all came back within 48 hours of stopping the meds. I am so angry! My mouth hurts so much. The blood tests were negative for coxscakie and my new infectious disease doc ran all kinds of blood work to check for vitamin deficiencies. There are NONE. So, we have no cause. But here I am, virtually unable to speak, not wanting to eat, and sick from trying to use the kenalog spray in my mouth (makes me choke!). This doc thinks this is just related to celiac, and wants to keep treating the symptoms until they finally subside. So, he doesn't want to use prednisone anymore, but is suggesting Dapsone. The problem I see with that is that I am allergic to sulfa drugs, and there is often an allergy to dapsone when someone is allergic to Sulfa. Really, seriously, has anyone had experience with this? I am ready to call the Celiac Disease Center to ask for their help. Thoughts? Kat
  14. Actually, you're wrong on the origin of the sores. These are NOT herpes and are not spread sexually. They are purely VIRAL. I have gone over and over this with the specialists. They have been cultured, etc. It is definitely NOT that. K
  15. So...another question for those of you that have had severe outbreaks like this before... I am now at Day 32 after the sores started, and they are virtually gone. There are still a few in there, and a few pop up each day, but go away fast, since I am still on prednisone. So, now that the mouth is healing, I am noticing that my tongue and inside of my mouth feel very strange - almost sandpapery - like a cat's tongue. I am also REALLY thirsty (which could be from the prednisone). I have taken 2.5 weeks of prednisone (40 mg a day the first week, 30 mg a day 2nd week, now down to 20mg a day and then will drop to 10 mg the 4th week). I feel much better, but this mouth sensation is strange - almost a tingling feeling. Has anyone experienced this? Maybe it's just scarring (hopefully temporary?) from all of those hundreds of sores... Thanks K gluten-free since 2003 Paleo diet about 90% of the time